So, if you live in the UK and have subscribed to Pompe Support Network, you should receive yours very soon (please let us know if it fails to arrive).
To quote our trustee, Dr Kevin O’Donnell:
Everyone in the Pompe community knows that the development of an enzyme replacement therapy was a huge step forward for people living with the disease. However, this wonderful collection demonstrates that we don’t need to rely exclusively on science and medicine to improve our lives.
Every gem in this life-affirming collection is an example of someone winning at life. In these somewhat trying times, it is a balm to the spirit to read of the many and varied ways that people have found to be happy.
I hope that you too will find the happiness in these pages infectious and, who knows, find something that you are inspired to try for yourself.
Further copies will be available to bring a little happiness at the Family Support Group Summer Gathering at The NeuroMuscular Centre on Saturday 22nd July 2023.
Sadly, our grant from the UK National Lottery doesn’t cover the costs of the book for overseas subscribers. We don’t have an online charity shop as yet, but if you would like a copy, we would suggest a donation of £10 (GBP) plus postage to cover our costs.
Please enquire at hello@pompe.uk
